Update

So here's a bit of an update:

-my legs and hip are still killing me. I have an MRI of my hip on Thursday, and the rheumy is supposed to call me back about my legs.

-the endocrinologist said that my prolactin levels are too high, so we are doing an MRI of my pituitary gland in two weeks. We'll also do a cortisol reaction test.

-the neurologist thinks that the numb/tingling episodes I've had the last few years are a weird kind of aura for migraines, but he wants to do a brain MRI just to check on things (I'll do it at the same time as the pituitary one)

-the mole on my inner labia that got removed (again) has come back as moderately abnormal (the first time was just mildly abnormal) so they said I have to come back in a third time to remove even more around it to make sure it's really all gone. Ouch. I'm making them do it under anesthesia this time since last time the lidocain couldn't go deep enough no matter how much they kept giving me and I felt them cutting and then cauterizing. I'm still not sure how the ones on my back, which has been sunburned and blistered a million times, are all benign, but my INNER LABIA is the one with the cancer scare?!

-I've decided to have the fistula plug surgery and am trying to get that scheduled.

-my CD seems to still be in remission, thank goodness. My next remi infusion is in two weeks. Last time I started getting really sharp, stabbing pains in my abdomen for about 10 minutes. I'll see if that happens again this time.

-I finally get to see a pain management doctor this Friday. I hope, hope, hope we can get something going.

-I finished the disability application. Now for the waiting.....

ummmm, what else...?

-we're running a ton of blood tests to find out why I am so dang exhausted all of the time. Even with two naps a day, I still am just so tired. But all of the hospital bloodwork on Sat night for the leg pain came back "normal" (I have GOT to start asking them for printouts of results. Sheesh.)

-I also have an appt with a chiropractor. Maybe that's why my legs and hip hurt?

I think that's it. Thanks all. Sorry for the rambling.

scifigal, are you able to see a physical medicine doctor to talk about your leg and hip pain? I'd like to see you cross that off your list before you work on medical management of this pain.

A physical medicine doctor, or a physiatrist, works on musculoskeletal problems. These are also sometimes called sports-medicine doctors, but they work with all kinds of people, not just athletes.

In college, pre-CD diagnosis. I had severe pain in my hip/leg for years. The pain seemed to emanate from the hip area, and would send shooting pain down my leg, to the point is was unbearable to walk sometimes. I went to specialists, had bone scans done, x-rays...and god knows what else...couldn't determine the cause. Fast forward a decade or more, when I started seeing a rheumatologist for constant spinal inflammation issues with the mid-thoracic she found that there was fusion in my lower back at SI. I was diagnosed with AS shortly after... but it was the AS that was fusing the SI and pinching the nerve back in college...the good news for me is that after years of pain management, it no longer is the cause of that searing pain, and feels normal (now that the joints are fused...but I can't tell the difference.)

Just wishing you good luck, scifigal.

Hope the MRI shows what's wrong. Even if nothing can be done, I'd still always rather know the cause of my pain.

Good luck with the labia surgery as well. I wouldn't fret too much about the fatigue; honestly, I'd be more surprised if you were bouncing around energetically, what with being a new mother, being in hospital a bunch of times, etc. Illness can be profoundly debilitating, and on top of that you have a baby, are on Remicade, and have other health problems. It can take months to convalesce and return to full strength after a prolonged bout of illness.